Bill > J01336

This resolution, a formal request from the New York State Legislature to Governor Kathy Hochul, urges her to officially proclaim February 28, 2026, as Rare Disease Day in New York. The resolution highlights that Rare Disease Day, observed annually on the last day of February, aims to raise awareness about rare diseases, which are conditions affecting a small percentage of the population and often lack cures or specific treatments. It notes that these diseases, numbering nearly 10,000, frequently go undiagnosed for years, with over 95% lacking FDA-approved treatments, and tragically, about half of those affected are children. The resolution also acknowledges the ongoing efforts by researchers, patient advocacy groups like the National Organization of Rare Disorders (NORD), and state initiatives, such as the Rare Disease Advisory Work Group, to improve diagnosis, research, and access to care for individuals with rare diseases and their families.

Budget and Finance

https://www.nysenate.gov/legislation/bills/2025/J1336